PET or CT Scan followups

gwydiana
gwydiana Member Posts: 47
edited January 2020 in ILC (Invasive Lobular Carcinoma)

My Oncologist refuses to request PET or CT scans for me 1.5 years after DX

On 4/6/18, I was diagnosed with Invasive Pleomorphic Lobular Carcinoma. It was a 17cm tumor which was missed for the previous 8.5 years. I had a complete double mastectomy as well as all of my lymph nodes removed on the right side. ALL of my right side lymph nodes were cancerous.

I cannot talk my Kaiser Oncologist into giving me a follow up PET or CT scan to ensure that no further cancer is present.

Does this seem logical to you?

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  • Hannah1962
    Hannah1962 Member Posts: 35
    edited December 2019

    I will be interested to read other people's experiences with oncologists ordering screening CT tests and PET scans. In terms of whether it is logical - I'm wondering if the idea is to wait for symptoms of progression before ordering something like a PET. I think also that some stage 4 patients take only letrozole (as long as it works in terms of preventing obvious progression). Those of us on letrozole and presumed in remission might not need to be scanned for screening purposes since even if there is a met lurking it's not clear we would need more than letrozole - until there's a new sign or symptom suggesting progression.


    It would be incredibly nice to know there is nothing lurking. However, I think your doctor and mine will likelydeny us the scans until or unless it looks like the cancer is growing (through new symptoms or an abnormal standard lab test - like maybe elevated calcium or abnormal liver results).


    I had so much LCIS in addition to my ILC and even tho my ilc was not too large, I have fears mine too was growing for a long time. I felt a lump in 2014 and it was ignored, based on not showing on a mammo. Then in 2016 my mammo showed asymmetrical density and still no biopsy. Finally, new doctors, new city, I found a new lump in 2018 that was biopsied even tho not visible on mammo -I was then diagnosed with ilc. I had a lumpectomy and wonder if I should have asked for bmx.


    Thank you for posting. I will follow this thread. And happy holidays

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2019

    gwydiana,

    I am a Kaiser patient in Northern CA. My mo has regularly scheduled me for PET scans, particularly in the early years of my dx. As time has passed I get PET scans less frequently, due to wanting to diminish exposure to radiation but if I have pain or other symptoms she is quick to order one. I should add that I am stage IV, so I'm sure that makes a difference. BTW, I am one who, besides rads to bone mets area, has never had chemo and has maintained NED status on AI's alone.

    Neither PET nor CAT scans are benign due to radiation exposure and they are enormously expensive. Using PET scans as a screening tool is not common and many, many doctors will not even consider it unless you are having symptoms or other issues that indicate spread of bc. I understand your concerns but again, unless there is reason to suspects metastasis, a scan just exposes you unnecessary radiation. Take care.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    I was stage III and had 5 pet scans in the 3 years before, during & right after active treatment. Then my MO retired. He said I would really have to fight for PET scans since most docs wouldn't order them. It has been my experience that I have to fight for every test - including a ULS and Breast MRI this fall at 5 years out - let alone a PET. I agree - just having someone feel up my chest (with no breasts) and do some blood work doesn't give me a warm, happy reassurance. I had my last PET 3 years ago since I refused to get my port removed until I was sure there was no immediate need. Now at least I have a radiologist who has recommended ULS every 2 years.

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  • gwydiana
    gwydiana Member Posts: 47
    edited December 2019

    what is ULS?


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    ULS = Ultrasound. Below is a link to abbreviations used on the board.

    https://community.breastcancer.org/forum/131/topic...


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2019

    I had to fight to get an US when I thought I felt a lump in my scar tissue last year. My insurance denied the MRI that my PS ordered, even though there was a concern it might be something growing. Even after my PS called the insurance company, they said no, that I had to have an US first, and if it revealed a problem, then an MRI would be warranted. Luckily the US was negative. I'll get an MRI next year to double-check implants.

    I've only had one PET, no CT, and that was ordered right after initial lumpectomy to make sure cancer hadn't spread distantly and to plan tx. I never had another, and I had 6/11 + nodes. I asked my oncologist about the lack of scanning for follow ups, and she said something like that is why she checks bloodwork first during regular checkups, looking for telltale signs of recurrence. If some CBC value was off, then down the rabbit hole I'd probably go, and probably then a PET would be warranted.

    Claire in AZ

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  • blah333
    blah333 Member Posts: 270
    edited January 2020

    (sorry I know I am in the wrong "cancer category" but the ordering of types of scans caught my eye)

    I had DCIS two years ago, found a lump on 12/30/2019, called the doctor. Had an appointment today and they ordered a CT scan, not sending me to ultrasound like I expected. I am fairly shocked and reading into this imaging choice that I must be doomed and must be something serious. The nurse said my lump felt "deeper" like in my muscle or chest wall. My DCIS was multi-focal, I'm worried they missed something. I never had an oncologist or anything following mastectomy except periodic ultrasound of my armpit. I have had some swollen nodes in my axilla area since surgery. I had a biopsy, but they messed it up, and when they went to redo it, they decided to biopsy a different node. So this combo of things also adds to my anxiety. I do not have implants/recon that would interfere with an ultrasound.

    Who has had a CT ordered for a lump but then had it be nothing?

    Based on this thread I suppose my assumptions are correct, the CT was ordered because they suspect the cancer is "growing" or returned. This is so fucked.

    Also - what is "abnormal liver results" mean? My bloodwork in September showed my ALT was low. That has never happened before. All I could find on this was "Low-normal ALT values (serum ALT activity <17IU/L) were found to be predictive for increased risk of all-cause mortality" WOW mine was 8. I did give blood today to make sure I can handle the CT scan, the blood results will be online in a few days.

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